Are you old enough…
To remember the Oscar Mayer song about bologna?
“My bologna has a first name is O-S-C-A-R,
MY bologna has a second name it’s M-A-Y-E-R…”
When I was growing up we heard this song quite often, I don’t hear it as much anymore.
Ha! This song is going to play on repeat in your head for the rest of the day.
You can thank me later!
But, back to the Demon.
I call my disease a Black Cloaked Demon. It has been wreaking havoc throughout my body for the last several years. It hides. Escaping detection. Maybe the Demon has “white coat syndrome” aka the ability to turn invisible whenever a doctor or nurse comes within 50 feet? Maybe I have a Super Villain Demon with invisibility powers?
After years of investigation we are now able to identify his first name. I always knew he had to be a man. He has a very dominate personality.
And his first name is Hughes. According to sheknows.com it is definitely a boy…
The name Hughes is a baby boy name.
People with this name have a deep inner desire to lead, organize, supervise, and to achieve status, power and wealth.
People with this name are excited by change, adventure, and excitement. They are dynamic, visionary and versatile, able to make constructive use of freedom. They fight being restricted by rules and conventions. They tend to be optimistic energetic, intelligent, and to make friends easily. They may be changeable, restless, untidy, and rebellious.”
Sounds like the Demon…except for the “makes friends easily” part. He is definitely rebellious!
“Antiphospholipid syndrome is a condition in which your blood is more likely to clot than usual. It’s sometimes also known as Hughes Syndrome. It can cause blood clots in your arteries and veins in any area of your body.
Antiphospholipid syndrome is a condition in which your blood is more likely to clot than usual. Because of this, the condition is sometimes called ‘sticky blood’.
Antiphospholipid syndrome is an autoimmune disease. This means that your immune system, which usually helps your body to fight infection, attacks the healthy cells in your body by mistake.
Blood clots are usually a normal part of your body’s healing process; they help to seal small cuts or tears on blood vessel walls. This prevents you from losing too much blood. If you have antiphospholipid syndrome, blood clots can form and block the blood vessels of organs such as your heart and brain.” (From www.bupa.co.uk/)
APS (Antiphospholidid Syndrome)
Mimics Multiple Sclerosis symptoms. So that explains the numbness, shortness of breath, muscle pain and spasms, inability to walk or sustain movement for very long. Symptoms vary greatly from patient to patient.
The Neurologist feels that APS explains most of my physical symptoms, but not the neurological issues. And the only way that we will figure that out is with time.
APS pairs itself with other diseases often: Rheumatoid Arthritis, Lupus or Multiple Sclerosis. At this point I am hoping that we will never know the Demon’s last name. The fight will continue.
After 10 weeks of rest the constant pain has abated. It is still there, but it whispers now instead of screaming. For that I am thankful. It was getting pretty dark on my horizon. Day upon day, week upon week, month upon month of bed rest and pain was getting to me. Actually, I think that what made it especially dark was the unknown. Not knowing if I would be able to clean my house, hang out with friends, write, or even have coherent thought processes. That was the hardest.
Now I have several good, active, hours a day. I can drive to the grocery store by myself and load and take care of the items purchased. It exhausts me, but I can do it. I can clean house, wash dishes, cook. And I have not had to use the wheelchair for the last three weeks. Yeehaw!!!
Exhaustion is hanging on, it takes me quite a bit longer to do things than before, but I am doing them. For that I am thankful!
There is no cure for APS. I take a blood pressure pill and aspirin everyday to keep my blood thin. And I am to avoid stress as it seems to be a trigger for a flare up. That, I suppose, is the biggest conundrum. How do you continue to be a wife, mother, an employee, business owner, a part of society-without stress? Especially when you are worried about finances due to the inability to hold a job? I am working on it.
Slowly, but surely I am coming back. Maybe not to who I was, but to who I will be.
For now, that is enough.
“My Demon has a first name it’s H-U-G-H-E-S…”
You’re welcome…for the ditty, playing itself over and over in your head!